Patient and Caregiver Update

   Les continues to feel a little bit better each day although his ribs on the right side hurt considerably. Why is that you might ask? Liver resection requires the ribs be lifted or spread out of the way.

   The torture device surgical instrument used is called a Finochietto Retractor--stainless steel with rack and pinion steering thumb screws to hold it in place. Needless to say Les' ribs are bruised and sore.

   When I arrived on Wednesday he was clutching his side in agony--face pinched and pale, lips trembling. Dear Sir had fallen asleep while waiting for me to arrive with his lunch and a ball of phlegm in his chest decided to cough itself up while he slept. It was an autonomic response for which Les was not prepared which woke him with searing pain. Usually when he is going to cough he tucks a rolled up blanket or a pillow over his surgical site and clutches it to ease the pain. A few minutes later a nurse arrived with extra liquid pain medicine which sorted Les out after about five minutes.

   The care provided by the staff of the Royal Free Hospital has been above and beyond reproach. The service provided there is first class--first world and it is the standard in my opinion which every British citizen should receive at any and all NHS facilities. 

   Les said on Wednesday that the surgical staff who visited him on rounds were pleased with his recovery and talking about sending him home by the weekend. I told Les No!! Not a good idea. It took us a month to get him a bed in the RFH and he needs to take as much time as is necessary and comfortable to be sure he is well enough to come home to the boat. To that end, On Friday afternoon I emailed Professor Davidson's assistant the following: 

I am writing to express some concerns I have regarding my husband Les Biggs who is on Ward 9 West recovering from a liver resection completed Monday last (November 3, 2014). I would appreciate it if you would kindly pass my concerns on to Professor Davidson and his team.

I've been in to visit my husband every day for 4 hours at a time. I've been bringing him homemade chicken noodle soup, fresh homemade yogurt with strawberries, and banana-blackberry smoothies with cross flow micro-nutrient whey powder blended in, which stops muscle wasting.

On Wednesday Les told me when I arrived at 2 p.m. that Professor Davidson mentioned Les possibly coming home on the weekend as he was progressing quite well. I have concerns about this time-line for discharge from hospital. Wednesday when I arrived, I found Les pale, lips trembling, and in a great deal of pain. He had fallen asleep waiting for my arrival and in his sleep a ball of phlegm irritated his chest and he automatically had a very deep cough--for which he was not prepared at all. The intensity of the pain knocked Les for six and exhausted him. (The nurses have been terrific about helping Les manage his pain--when he remember to ask for pain meds, and Sheila--the Enhanced Recovery nurse--has been absolutely wonderful and attentive to my husband's needs).

After some good food, and an afternoon of light rest I asked him if he felt like taking a small walk. Les said yes and I helped him to walk from his bed and out the corridor about halfway between his ward room and the one next door. We turned around and walked back to his bed and he was spent. I suggested that perhaps he might want to take shorter walks more often--say walking from the bed to the doorway of his ward room and back three times a day to start. Les knows that the sooner he walks, the sooner he walks out of the hospital and he is committed to doing everything he can to get on his feet and get better. I believe though that he may be overdoing it and pushing himself too hard in the hopes of coming home right away. Yesterday when I arrived Les said that he had gone for a walk with Sheila, up the corridor almost to the nurses station and then could not muster the strength to walk back. Quick thinking by Sheila kept Les from falling and together they finally did manage to get him back to bed.

Doctors do their patient visitation rounds in the early morning when most patients have had a night's rest and their energy levels are the highest. By the time I arrive at 2 p.m. each day I see a patient whose energy has peaked and is on the downturn which offers a very realistic idea of what my husband is capable of coping with at present.

I do not believe it is in Les' best interest to be discharged before Tuesday at the earliest. There is also one other issue which I ask Professor Davidson to take into consideration when looking ahead to a discharge date for my husband: we live on a boat not in a house. This means we will not be pulling into the driveway, helping Les to take 6-8 steps from the car to the house and settling him in.

Les will have to walk from the car out to the towpath and down the muddy, slippery, uneven towpath for a distance of 75-500 feet depending on where we are moored, in order to reach our boat; it is then a step off the towpath and over the bow of 20 inches width and a drop from the towpath to the bow deck of nearly three feet on a boat that is at present in high winds, moving about, rocking and not stock still.

We are currently moored up in Berkhamsted which provides me with easy access to the train in order to visit Les daily, however I need to move our 18 ton narrow boat up eight locks to Cow roast (Tring) in order to moor for any length of time over 14 days and to provide Les with a quiet, dark, and peaceful atmosphere surrounded by other boaters who will assist us in the months ahead. I also need to take in consideration the best location for me to access water, rubbish and other facilities (the boat must be moved twice a week to get water and empty the trash).

We heat our floating home with a solid fuel stove. In order to keep the boat and Les warm and comfortable this means the stove must be attended to constantly throughout the day--the ashes must be swept out, bags of wood must be brought in and a bucket of coal--every day. A bag of coal lasts about four days and then a new 50 pound bag must be hoisted off the roof and into the well deck on the bow. Les usually does this but I will be doing it for the next three months. I will in short be doing all my activities of daily living aboard the boat and his too, as well as taking care of him so he doesn't over due things, managing his exercise so he continues to regain his strength and preparing wholesome food etc. etc. ..as we live on a boat with only 110 feet of actual living space it is key that I am as organized as possible and our home is ready for Les as well as Les being ready to come home.

To this end I respectfully ask that Les not be discharged before Tuesday November 11th and that I am given 48 hours notice of his discharge date so I can move the boat and ensure things are prepared for Les' arrival. Please let me know if you have any questions or concerns about my request. I wish to offer my humble thanks to everyone who has provided superlative care for my best beloved.

   This morning Les phoned at 7:30 a.m. to say he has a temperature and some pain in his side.  He phoned again at 9 a.m to tell me staff were at his bedside with vials testing his blood. He asked them if they were looking for Sepsis. The woman said, "Yes. How do you know about Sepsis?"

   "I had it after my last operation and my wife recognized the symptoms."

   "Is your wife a doctor?"

   "No, she works for a university and is trained to do research. She researched the symptoms and knew what to look for." As it turns out Les does have a temperature but he does not have Sepsis--thank The Goddess. The best place for Les to be right now is right where he is--receiving excellent care and being watched carefully and resting until he is actually well enough to return home to my care. 

  And what about moi? Instead of beginning this post with a quote I've chosen to include this 1984 U.S. Dunkin Donut commercial because it encapsulates exactly how I feel about this past week and the one to come. My daughters know the phrase "Is it time to make the donuts? It's time to make the donuts," has a special resonance in our family!

   I feel like I've met myself coming and going on the train in to Euston. Everything else is a flash in between until I get to the RFH and Les' bedside and then back again to collapse in my reclining chair on the boat every evening.

   Life has been complicated by my putting my S-I (Sacro-Iliac) out on my right side last Tuesday afternoon. The odd thing about this injury is that one does not automatically feel it in the lower back/hop area--it is felt first in the knees, as one leg is longer than the other by about a quarter of an inch. All the muscles and ligaments at the knees torque out of place to accommodate walking and it feels like thirty inch splinters are being driven through my knees and calves. Searing pains shot down my legs as nerves are pinched.

   By Wednesday every step was agony and by Friday I could barely walk and I was completely exhausted from the pain and an inability to sleep as my S-I joint popped in and out of place while I rolled around in bed all night. 

   Fortunately a blog reader and dear friend Anonymous A. (Angela) came to my aid. Angela lives in Berko and happily picked up a few groceries for me as well as a brochure for a chiropractor a stone's throw from the canal.

   My deep thanks to Dr. Gary Kirwin of Naturality Chiropractic for seeing me on such short notice and sorting me out. He adjusted me with firm, gentle care while talking with great enthusiasm about narrow boats!  His practice is located In Berko on New Road--in between the Cook! gourmet food shop and the Waitrose parking lot entrance. I can see the building's chimney from our mooring on the cut. It will take a few days for my knees to stop aching.

© Peter and Susan, NB Dreamer

   In the meantime I am making tidbits to take into Les each day to supplement the nasty hospital food which has had all the nutrients and taste steamed out of it.

   I am also quite proud of myself for moving the boat yesterday to fill up with water. I forgot to put the TV antenna down but still I managed to just slot the boat in at the water point without becoming entangled in the Whomping Willow tree branches just waiting to ensnare anything on a boat roof. 

   After filling up with water and dumping the rubbish I reversed back across the canal to our mooring spot, deftly missing all other moored boats and a dutch barge which cruised into sight suddenly from behind the aforementioned mass of will branches much to our mutual surprise! I didn't reverse as deftly as Les does but no children, animals, or boats were harmed in the process so it's all good!

   Finally many thanks to Ken and Sue Deveson for visiting Les in hospital and for their moral support, offers of help, and ongoing friendship; to Maffi who stopped one evening on his Autumn Progression to say hello and have dinner with me; to Angela for running errands and practical support. Many kind thanks as well to everyone else who has called, texted, emailed and commented on this blog to offer support, encouragement and assistance.